Medical Concerns
Like most family members, you want to do everything you can for your loved one who has a
serious illness. Most people have never before taken care of a person with a serious illness, and the
process can be very new and overwhelming. Things that were helpful in the past may not be working now.
Real concerns such as "Why is he not eating" ,"Where do I get help", or learning simple caregiving
techniques and how to manage pain and other distressing symptoms now
become critical.
Many times this is the first time that your loved one may have thought about what he wanted in
terms of treatment and eventually end-of-life care. Talking together as a family and
with your doctors about treatment options, and the risks and benefits of each
treatment will help to ensure that your loved one receives the type of medical care he or she wants
and needs. It is important to get the information you need to make good decisions. Your palliative care
nurse from Partners In Care can help with these very difficult decisions.
As important as it is to make good decisions, knowing when you need to get some help is critical
as well. Research the various types of care that are available and identify the services that are
most appropriate as needs arise. Your Partners In Care social worker is here to help you to explore
and find the resources that fit your needs.
Sometimes it helps the person suffering from serious illness and their caregivers to learn what to
expect. This helps you to prepare for changes in care and honor your loved one's wishes and support
their choices as together you travel through the course of their illness.
Managing Pain
As so movingly stated by Helen Keller, "Although the world is full of suffering, it is full
also of the overcoming of it."
It is difficult to watch someone you care for go through bouts of pain. It also can be difficult
to forsake precious time you could have together because your loved one is sleepy or "out of it" as the
result of taking pain medication. But keeping patients comfortable and free from pain sometimes
involves accepting trade-offs. It is the patient who ultimately must decide about his or her priorities
in regard to pain control. At a time when so little is in a patient's control, honoring his or her
decision about how much pain medicine they are willing to take is crucial to their overall well-being.
Accurately describing pain
Many caregivers are surprised to discover that the person they care for downplays pain in front
of the doctor. Even when they are asked a direct question about it, many patients deny having much
pain, when in fact they have been experiencing significant discomfort or distress. A variety of
reasons could explain their response: They value being stoic; they don't want to be a
"difficult patient"; they fear that more pain means the disease is getting worse; or they don't
know how to describe what they are feeling - they may experience significant discomfort, but fail to
recognize it as "real pain."
The simplest way to communicate about pain is to give it a score from 0 to 10, with zero
representing no pain and 10 referring to excruciating or unbearable pain. Somehow assigning a
number helps both the patient and the physician put the pain into an easy-to-understand perspective.
Other questions that will help inform the doctor include:
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Talking with you Doctor
Preparing for the appointment
When you have a serious illness, many questions are likely to arise, and you have a right to
the answers. During a doctor's appointment, however, it's easy to get side tracked. Anxiety often
runs high and can block your clearest thinking. As well, doctors have schedules to keep. If you feel
pressured during the appointment, it may be difficult to stay focused on addressing each of your
concerns. We suggest you maximize your time with the doctor by preparing for your appointments
beforehand.
Here are some tips: